Moscow conference on palliative care for children

04.04.2016

Participants in the conference, which was organised by the hospice foundation Faith for parents of seriously ill children in Moscow and the Moscow region, discussed the issues of medical care and social support for children in need of palliative care.

The conference, held on 2 April 2016, was attended by more than 100 parents of seriously ill children and over 30 speakers from the fields of healthcare, social welfare, education, patients’ organisations and NGOs. The conference considered the problems of obtaining the drugs, medical equipment and supplies vital to the survival of seriously ill children.

According to the Faith foundation, obtaining essential rehabilitation equipment for terminally ill children is very complicated. “There are even disagreements between experts and officials; on what the children are entitled to, how to resolve a conflict situation, such as when wheelchairs or orthopaedic footwear allocated by doctors in accordance with the law are not provided”, the foundation emphasises.

Children are still waiting between six months and two years for purpose-built wheelchairs. “During this time, children may develop irreversible curvature of the spine or joint deformities. Meanwhile very few receive education, though it has been shown that every child is capable of learning”, states the organisation.

As a result of the recent conference the foundation plans to collate the key problems to be solved, including at a legislative level. The main issues, according to Faith, remain “insufficient budgets for compensation, complicated and constantly changing procedures, and a lack of coordination between different agencies and departments”.

Conference participants included representatives of state agencies and medical institutions, as well as pro bono lawyers from the Give Life charity, specialists from the Centre for Curative Education and the Regional Society of Disabled People ‘Perspective’, which held a consultation for parents.

“If what is available today had been there 13 years ago, maybe things would be different for my daughter. We paid for her rehabilitation ourselves. In three weeks we will be transferred to an adult clinic. I do not know what awaits us, that is a different problem entirely. But I am very glad that these initiatives exist. I want not only to find things out for myself, but also to share my experience with other parents – I have a lot”, said Nadezhda, one of the parents participating in the conference Nadezhda.

Author: Irina Laktyushina

http://www.asi.org.ru/news/itogi-sotsialno-pravovoj-konferentsii-fonda-vera/